A blog about autism, written by a grad student on the borders of autism.

Sunday, May 10, 2009

A Book Signing and Review

I spent a good bit of yesterday attending a book signing at a local Barnes and Noble. The book in question, I Love U: Our Journey Through Autism, is yet another account of the experience of raising an autistic child. While there are quite a few of these (of varyingquality), Mr. Arnwine, the author, was quite respectful (even after finding out that I was autistic), and I promised him a review of his book from an autistic perspective.

To start off with, the book is fairly short (70 pages, counting the introduction; 71 counting the dedication) and pretty expensive (around $12 at most of the places I've seen it sold at) for its length. Given that the book is self-published, however, this can be forgiven.

Next, let's take the book's self-description. To quote:

I Love U, gives the reader an insight into our journey through the challenges and victories of our son's battle with autism. It shows a path from expected normalcy to the accepted reality of Shane's autism and his incredible progress. The book discusses our experiences with stories, from our daliy lives to illustrate the signs we observed, which led to an early diagnosis. Each story is preceeded with the signs to look for and within the story, the signs are highlighted. This book is admittedly a short read.The goal is to show the reader that with early diagnosis, treatment, and therapies we saw incredible progress with Shane.

I promised Mr. Arnwine that I wouldn't be overly critical of his typographical mistakes, so I won't comment on the three I noticed when skimming the above paragraph. Objectively speaking, however, it's worth noting that the book wasn't professionally edited.

More importantly, however, note the use of the phrase "battle with autism". Beyond issues of how offensive this type of description is (can you imagine the feminist movement's reaction to a parent describing their daughter's "battle with femininity"?), there's the fact that it's pretty obviously a case of reification error. The fact that such language encourages mistakes of this sort is a large reason why the autistic community dislikes "person-first" language (e.g. "person with autism" as opposed to "autistic person"). A more appropriate -- and accurate -- way to say what I suspect that Mr. Arnwine meant would be, "struggles with life in modern society as an autistic person".

Another point that needs to be made is that Mr. Arnwine attributes his son's "progress" to the various interventions his child recieved. Technically speaking, maturation is a major challenge to the internal validity of this sort of observation.

To put that in plain English, it's hard to tell what was Shane learning from the interventions and what was simply a result of Shane growing up. Additionally, no definition of "progress" is given in the above, leaving ambiguity as to what exactly he meant... and, as appropriate therapeutic goals are very much under debate, this is worth noting.

Similarly, claims of the importance of early intervention are usually based on Lovaas's "classic" 1987 study, a highly flawed study which evaluated a highly unethical intervention using invalid measures (among other methodological problems and a failure to report critical information). A followup study is also frequently cited on this, but it also suffered from a similar lack of methodological rigor... and used the same, invalid measures. While I could go into a detailed critique of the relevant literature, the book does not even reference it, instead accepting the importance of early intervention as a premise.

I'm not saying that early intervention is bad, or that Shane didn't benefit from it. I'm saying that the science here is questionable at best. There's also recent research that suggests that the "stereotyped autistic behaviors" that early intervention programs often aim to stop are developmentally important.

Then again, the research there often doesn't even consider that possibility -- it's abnormal (i.e. not something that most people do) and therefore, to the people doing that research, it must be stopped. The fact that doing so causes considerable harm to the victim of their so-called "therapies" is ignored.

In other words, it's more important to insure that a child gets good intervention than early intervention. The sheer number of absurdly bad interventions is mind-boggling. Shane seems to have lucked out in this regard... but many other children don't.

To the book's credit, there is a brief account of a run-in with poor therapy on p. 38. Specifically, it was with incompotent behavior therapists. As someone who's had such an experience himself, I congratulate Mr. Arnwine on giving them the metaphorical boot.

I bring these issues up in the context of the book summary because all of them become repeatedly apparent when reading the book. Were I to address them in the context of every chapter in which they pop up, this review would quickly reach an utterly absurd length.

Judging by Mr. Arnwine's verbal comments, however, he had to get the definition from somewhere... which leads into issues of the availability of good information. While the autistic community has worked hard to create a number of excellent resources and to make them easy to use, we haven't been so good at making them easy to find and/or giving them publicity. I sincerely regret that.

Fixing it, however, will be a long, difficult process. I guess I have a rather large task ahead of me, especially given the abundance of available misinformation.

There are also some specific points in which the author appears not to fully understand autistic behavior.

For instance, Mr. Arnwine also doesn't seem to have a very firm grasp on the difference between a tantrum and meltdown. While meltdown often looks like a tantrum, especially in a young child, they're extremely distinct phenomena.

From a more practical viewpoint, meltdowns are characterized by skill loss, a subjective feeling of being overwhelmed, and (often) a need to escape or to retreat to a "safe" place. Tantrums are something else entirely.

Regarding Shane's childhood "flapping episodes", hand-flapping seems to be a response to excitement and/or happiness in autistic children. Contrary to Mr. Arnwine's initial impressions, they are/were probably not signs of distress. Shane's thrashing in response to his head getting wet, however, almost certainly was.

Regarding Shane's sensitivity to things being placed on his head and/or his hair getting wet, the head is one of the most important parts of the body for thermal regulation. While I can't comment in a clinical capacity, it certainly seems that Shane is responding to things that effect the regulation of his body temperature.

Oh, and I did the shirt-tag thing, too -- well into high school. They itch.

Mr. Arnwine also mentions the play activity of lining up objects. While it's a stereotypical autistic play activity, it also appears to be important to autistic development. Rather than being a source of worry, parents should learn to enjoy watching their children do this -- in much the same way parents of neurotypical children enjoy watching their children explore and try to make sense of the world.

Finally, the "high tolerance for pain" thing is greatly oversimplified... but that's not a can of worms I want to open up in a book review.

That said, Mr. Arnwine very much has a positive attitude for a parent... if somewhat misinformed. For instance:

Since I was so open with Shane's diagnosis, I was commonly asked, how did he get autism? Honestly, we never spent much time or energy on the cause, we focused on treatments and therapies. I have become active in Shane's school and learning his rights to become the most affective advocate for him, which I feel is my most important role to support him.

Yes, it's something of a grammatical mess... but, again, I promised not to be too critical of the grammar. Suffice it to say that I'm going on the assumption that while "affective" is probably accurate, "effective" is probably the word Mr. Arnwine was going for.

And, while this is a very healthy attitude overall, there are a number of embedded assumptions which are problematic.

First off, autism isn't something you "get". This is another example of reification error, as I explained above. Later in the book, Mr. Arnwine briefly mentions the vaccine fraud that's spreading around, for instance (in a "maybe it's true" sort of way). This is fully inconsistant with his overall view of autism... which, from our conversation, is that of something which cannot be separated from the autistic individual. Reading Jim Sinclair's "Don't Mourn For Us" would probably be very helpful in understanding this issue.

Despite this, parents rarely read that essay unless they somehow -- by coincidence, usually -- run across ANI.

His language also manages to imply that he's targetting Shane's autism (as opposed to Shane himself) with "treatments and therapies". This, in turn, also implies that autism can be separated from the autistic... something that's not possible.

In conclusion, I Love U is a brief case study in how families deal with the arrival of an autistic child. Taken as such, it's a pretty decent read.